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Posts (12)

Sun, Jul 21 11:33am · Fibromyalgia in Autoimmune Diseases

Sundance, I do hope you find your path for health. Good luck to you and please do post updates!

Sun, Jul 21 11:27am · Fibromyalgia in Autoimmune Diseases

I do want to take LDN, but I have been on opioids since 2002ish – a very long time. I have been cutting back as I was up to wearing a 100mg (mcg?) Fentanyl patch, with 8 10/325 Norco a day. Now I have a Butrans (bupropion) patch and 4 Norco a day. Getting ready to change over to oral Butrans in place of the Norco and cut back even more, if I can tolerate it given I’m doing so much at once.

Thu, Jul 18 12:09pm · Celiac Disease (refractory type) in Digestive Health

Oats can also have the highest levels of the pesticide glyphosate on them. I wonder if that affects people too. When they found this out last summer that Quaker Oats and their instant oatmeal was loaded with glyphosates, Quaker changed their packaging to make it look healthier. They didn’t go so far as to change to a non-gmo grain.

Thu, Jul 18 12:06pm · Fibromyalgia in Autoimmune Diseases

My naturopath wants to put me on LDN next.

Thu, Jul 18 11:36am · Fibromyalgia in Autoimmune Diseases

I have tried it all – the medications, the massages, the physical therapy, surgeries, the entire gambit. Over a million dollars spent on my body between chronic pain management, surgeries, alternative therapies (lots and lots of massages, acupuncture, etc.).

Gapapentin and psychotropics are the worst things I ever took. Some helped, most made me tired and stupid. But this is my body – not everyone is me, so they might help you. I have had the rheumatologist put me on medications that make me so sick that I couldn’t move. I agree with the person who posted on here that it is all in the gut. Cleaning up one’s diet, getting rid of inflammation causing foods including sugar, and eating fresh, healthy foods is key. I recently went to a naturopath who is treating me for Lyme, which I was finally diagnosed with after being told it looked like I had it by my orthopedic surgeon 25 years ago. Getting a Lyme diagnosis is difficult unless u walk into the doctor’s office with a bullseyes rash with a tick hanging in the middle of it. Pardon my pessimism, but like I said, I have been through it. When I first started Lyme treatment I thought I was going to die. But now I’m over the initial die off and I have energy for the first time in years. I don’t know if it will last because I also have Behçet’s Disease (a rare vasculitis) – I don’t know if it will ultimately cure me – but I’m going to keep working with my naturopath and PCP. Also, CNN posted an article yesterday where the pentagon has requested records from the military, saying they found information that the US military weaponized ticks to carry diseases between 1950 and 1977 in New York. Interesting that is where the majority of Lyme cases are. We are seeing them in Oregon now. I will be watching this closely since this is such a hot spot topic for the cdc.

Also, I have seen the ads for the new test for fibromyalgia. I always question new things until they are tested tried and true because there is a lot of money to be made for the companies who have a “94% totally accurate test”. Are there false positives, negatives, do they know? I’m taking a wait and see for that test before I take it. I was diagnosed with fibromyalgia in 1992, when it was all in my head, they said. That’s when I started five years of physical therapy, massage, Rolfing and other treatments five times a week, which kept me moving, until I couldn’t afford them and all the pain came back.

The horrible thing is that the only drug that has ever really helped has been opioids. And they are being criminalized now, as we all know.

I have been struggling with these issues for so long – I get hope, I get worse, there’s a new drug, there’s this and that – but I personally find diet, exercise, and non-western medicine help the most. When I can afford them! Pessimism is me as so many of these treatments have ruined my life.

Wed, Jul 17 9:21am · Reynolds with buergers disease and severe chronic fatigue in Autoimmune Diseases

Hi there – I have Behçet’s Disease, another rare vasculitis Disease. Stopping smoking is a large part of the treatment for you, but your doctor should test you to find the cause. Burger’s can be brought on by autoimmune responses in your body or genetic issues, etc. I don’t know what your job is or if you suffer any chemical, dust or exposure to on the job hazards, but I would get checked for that too. If your hands and fingers are going numb, you can lose them. I would highly encourage you to get a release from work from your doctor and insist on more testing. And above all, stop smoking. I’m sorry you are going through this. Being sick, with children and having to work is so difficult. Do you have long term disability insurance either privately or through your company? I worked until I fell down and couldn’t. Way too long after I should have. I could have suffered death from stroke, heart attack and pulmonary disease because I wouldn’t stop working. Making the decision to stop was the hardest thing I’ve ever done in my life.

Wed, Jul 17 9:02am · Lyme Disease in Autoimmune Diseases

I just saw this post so I’m late to the party. I just posted their information as they did my test!

Wed, Jul 17 8:59am · Lyme Disease in Autoimmune Diseases

Hi there – I have had Lyme issues for years. I recently found a doctor who would test me for it. She is a naturopath (Yale graduate) who lost her ability to walk to Lyme disease. She sent my blood work to Igx IGeneX, Inc. in Milpitas, California, 800-832-3200. A specialty lab is more likely to be able to test for Lyme’s properly.

I say this because apparently there are political issues at work surrounding Lyme Disease with the cdc and insurance companies on what is defined as positive in a blood test. You can have the infectious disease in your blood, be positive, and the cdc won’t recognize it. Also, Chronic Lyme Disease is wholly not recognized, as you are finding, in a large part of general Western Medicine outside of the East Coast. I am on the West Coast and it is tough! They are just now recognizing the presence of Lyme’s in the Pacific Northwest, but basically if you don’t walk in to the doctor’s office with a bullseye rash specific to Lyme’s, with a tick bight in the middle, you will likely not be tested, not be tested properly, and more than likely misdiagnosed. The larger percentage of people who acquire Lyme’s do not get the bullseye rash. I hate to be a bummer, but my orthopedic surgeon told me 20 years ago he thought I had “something like” Lyme’s and I couldn’t find someone to test me until last week. This was even after my life fell apart, I couldn’t move and had even gone to an infectious disease doctor at Stanford University School of Medicine. That speaks volumes. And I have gotten so sick so many times. I will never be well because of all of the issues I have along with Lyme Disease: fibromyalgia, recent mono infection, Behçet’s Disease, arthritis and other things – to add Lyme’s Disease to my plate was partially a relief just to know but I just cried. My body has suffered so much more because I have gone so long undiagnosed.

The cdc has a different set of criteria for what is positive for Lyme Disease. The lab that tested me showed the comparisons.

I hope you find someone who will treat you. It is so important to catch it early. I’m sorry the doctors won’t listen to you – I understand so much how that feels. I have had a journey through life in fighting to get diagnosed and to find doctors who will listen.

If you want to talk to a doctor, you can email mine: Dr. Shalini Kapoor – Kapoor.shalini@gmail.com or Om.i.medicine@gmail.com. She is treating me for Lyme Disease and might be able to help you find someone. She is located in Hillsboro, Oregon.